Family rallies for Kerr's Cause to help defeat muscle disease

When Alyson Hunter noticed her toddler needed help to climb the ladders of a chute, she thought he was just not going to be a sporty wee boy.

By The Newsroom
Monday, 2nd May 2016, 7:00 am
The Hunter family from Brightons
The Hunter family from Brightons

But she soon discovered his frail muscles were a sign of something more sinister; a disease that would drastically shorten his life.

It was just a few days before Christmas when three-year-old Kerr was diagnosed with Duchenne Muscular Dystrophy, a muscle-wasting disease.

Alyson said: “He was struggling to go up and down stairs or go down a kerb without support. If he was sitting down, he couldn’t get up normally.

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“We mentioned it to the health visitor who referred us to the physio who picked up something wasn’t right.

“Kerr was referred to a paediatrician. He diagnosed hypermobility but did some blood tests to rule out anything more serious.

“He expected them to come back clear and said that we’d only hear back if anything showed up.

“A few days later, we got a call; we knew it wasn’t going to be good news.”

Known as DMD, the condition causes muscles to weaken and waste over time, leading to increasing disability.

Caused by a genetic mutation, the body is prevented from producing the protein dystrophin which acts as a cushion for the muscles.

Without it, muscles, including the lungs, heart and respiratory system, weaken and die.

Currently, few people suffering from DMD live to see their 30th birthday.

Alyson (32), from Brightons, said: “We felt devastated; the future we thought he would have suddenly became very different.

“It was difficult knowing he would be unlikely to lead an independent life, drive, travel, have a career.

“It’s very hard to accept, and it’s so unfair.”

But Alyson, a receptionist at Lint Riggs Dental Care in Falkirk, and HGV mechanic husband Alistair (36), very quickly decided to adopt a positive attitude, and devote their energy to looking after their son and raising money to fund research.

She said: “We focus very much on the here and now.

“We are determined to take each day as it comes and not dwell too much on what the future holds. We can deal with that when it happens.

“We are a very close family, with very positive attitudes. The family has been a fantastic support.”

Since Kerr’s diagnosis, Alyson and Alistair have also received tremendous support from NHS Forth Valley, their employers and the local community.

Alyson said: “The NHS care team has been fantastic.

“Because Kerr is so young, he is not massively affected at the moment, but the physio comes to the house to check him over.

“The staff at Kerr’s nursery – Wallacestone – have also been great, and our physio has visited them to let them know what to expect.”

Kerr was diagnosed relatively early. Most children are diagnosed by five, with the majority needing a wheelchair by 12.

Kerr takes steroids to improve his muscle strength, but they have nasty side effects.

“They make him very emotional,” said Alyson. “We now have to leave a light on in the hall at night and he has nightmares frequently.

“He’s still a cheeky, lovely three-year-old with a great wee personality – and that’s not going to change.”

The Hunters have set up their own fundraising campaign, Defeating Duchenne – Kerr’s Cause, to help beat the disease.

All monies raised will go to Muscular Dystrophy UK, which is now funding 14 research projects in the UK.

Kerr’s aunt and some friends are doing 5K runs, while Alistair’s former work mates are running a 10K.

Alistair will also be abseiling down the Falkirk Wheel in September with Alyson’s 21-year-old nephew Sam Dick.

Alyson said: “We’re also trying to get people to sign up to take part in a skydive at St Andrews, organised by the charity every February. We’ve had no takers yet!

“We’re holding a fundraising night in the Dobbie Hall in September when Dionne Hickey will be singing for us. We’re still looking for caterers, a DJ, and any other form of entertainment and would appreciate any help.”

To help with the family’s fundraising campaign, please email [email protected] or search Defeating Duchenne Kerr’s Cause on Facebook and Justgiving.